Four Questions to Guide Decision-Making for Data Sharing and Integration
Introduction This paper presents a Four Question Framework to guide data integration partners in building a strong governance and legal foundation to support ethical data use. Objectives While this framework was developed based on work in the United States that routinely integrates public data, i...
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| Format: | Article |
| Language: | English |
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Swansea University
2023-10-01
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| Series: | International Journal of Population Data Science |
| Subjects: | |
| Online Access: | https://ijpds.org/article/view/2159 |
| _version_ | 1797417603229024256 |
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| author | Amy Hawn Nelson Sharon Zanti |
| author_facet | Amy Hawn Nelson Sharon Zanti |
| author_sort | Amy Hawn Nelson |
| collection | DOAJ |
| description |
Introduction
This paper presents a Four Question Framework to guide data integration partners in building a strong governance and legal foundation to support ethical data use.
Objectives
While this framework was developed based on work in the United States that routinely integrates public data, it is meant to be a simple, digestible tool that can be adapted to any context.
Methods
The framework was developed through a series of public deliberation workgroups and 15 years of field experience working with a diversity of data integration efforts across the United States.
Results
The Four Questions - Is this legal? Is this ethical? Is this a good idea? How do we know (and who decides)? - should be considered within an established data governance framework and alongside core partners to determine whether and how to move forward when building an Integrated Data System (IDS) and also at each stage of a specific data project. We discuss these questions in depth, with a particular focus on the role of governance in establishing legal and ethical data use. In addition, we provide example data governance structures from two IDS sites and hypothetical scenarios that illustrate key considerations for the Four Question Framework.
Conclusions
A robust governance process is essential for determining whether data sharing and integration is legal, ethical, and a good idea within the local context. This process is iterative and as relational as it is technical, which means authentic collaboration across partners should be prioritized at each stage of a data use project. The Four Questions serve as a guide for determining whether to undertake data sharing and integration and should be regularly revisited throughout the life of a project.
Highlights
• Strong data governance has five qualities: it is purpose-, value-, and principle-driven; strategically located; collaborative; iterative; and transparent.
• Through a series of public deliberation workgroups and 15 years of field experience, we developed a Four Question Framework to determine whether and how to move forward with building an IDS and at each stage of a data sharing and integration project.
• The Four Questions—Is this legal? Is this ethical? Is this a good idea? How do we know (and who decides)? —should be carefully considered within established data governance processes and among core partners.
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| first_indexed | 2024-03-09T06:21:13Z |
| format | Article |
| id | doaj.art-c5d51111ec0c49529f5f3a1560713eaa |
| institution | Directory Open Access Journal |
| issn | 2399-4908 |
| language | English |
| last_indexed | 2024-03-09T06:21:13Z |
| publishDate | 2023-10-01 |
| publisher | Swansea University |
| record_format | Article |
| series | International Journal of Population Data Science |
| spelling | doaj.art-c5d51111ec0c49529f5f3a1560713eaa2023-12-03T11:43:24ZengSwansea UniversityInternational Journal of Population Data Science2399-49082023-10-018410.23889/ijpds.v8i4.2159Four Questions to Guide Decision-Making for Data Sharing and IntegrationAmy Hawn Nelson0https://orcid.org/0000-0001-5960-3437Sharon Zanti1University of Pennsylvania, Actionable Intelligence for Social Policy, Philadelphia, PA 19104University of Pennsylvania, Actionable Intelligence for Social Policy, Philadelphia, PA 19104 Introduction This paper presents a Four Question Framework to guide data integration partners in building a strong governance and legal foundation to support ethical data use. Objectives While this framework was developed based on work in the United States that routinely integrates public data, it is meant to be a simple, digestible tool that can be adapted to any context. Methods The framework was developed through a series of public deliberation workgroups and 15 years of field experience working with a diversity of data integration efforts across the United States. Results The Four Questions - Is this legal? Is this ethical? Is this a good idea? How do we know (and who decides)? - should be considered within an established data governance framework and alongside core partners to determine whether and how to move forward when building an Integrated Data System (IDS) and also at each stage of a specific data project. We discuss these questions in depth, with a particular focus on the role of governance in establishing legal and ethical data use. In addition, we provide example data governance structures from two IDS sites and hypothetical scenarios that illustrate key considerations for the Four Question Framework. Conclusions A robust governance process is essential for determining whether data sharing and integration is legal, ethical, and a good idea within the local context. This process is iterative and as relational as it is technical, which means authentic collaboration across partners should be prioritized at each stage of a data use project. The Four Questions serve as a guide for determining whether to undertake data sharing and integration and should be regularly revisited throughout the life of a project. Highlights • Strong data governance has five qualities: it is purpose-, value-, and principle-driven; strategically located; collaborative; iterative; and transparent. • Through a series of public deliberation workgroups and 15 years of field experience, we developed a Four Question Framework to determine whether and how to move forward with building an IDS and at each stage of a data sharing and integration project. • The Four Questions—Is this legal? Is this ethical? Is this a good idea? How do we know (and who decides)? —should be carefully considered within established data governance processes and among core partners. https://ijpds.org/article/view/2159data governanceethical data sharinglegal frameworks for data integration |
| spellingShingle | Amy Hawn Nelson Sharon Zanti Four Questions to Guide Decision-Making for Data Sharing and Integration International Journal of Population Data Science data governance ethical data sharing legal frameworks for data integration |
| title | Four Questions to Guide Decision-Making for Data Sharing and Integration |
| title_full | Four Questions to Guide Decision-Making for Data Sharing and Integration |
| title_fullStr | Four Questions to Guide Decision-Making for Data Sharing and Integration |
| title_full_unstemmed | Four Questions to Guide Decision-Making for Data Sharing and Integration |
| title_short | Four Questions to Guide Decision-Making for Data Sharing and Integration |
| title_sort | four questions to guide decision making for data sharing and integration |
| topic | data governance ethical data sharing legal frameworks for data integration |
| url | https://ijpds.org/article/view/2159 |
| work_keys_str_mv | AT amyhawnnelson fourquestionstoguidedecisionmakingfordatasharingandintegration AT sharonzanti fourquestionstoguidedecisionmakingfordatasharingandintegration |